Real‐world complication burden and disease management paradigms in transfusion‐related β‐thalassaemia in Greece: Results from ULYSSES, an epidemiological, multicentre, retrospective cross‐sectional study

Patients with transfusion-dependent beta (β)-thalassaemia experience a broad range of complications. ULYSSES, an epidemiological, multicentre, retrospective cross-sectional study, aimed to assess the prevalence and severity treatment disease complications, capture management identify predictors complications in patients β-thalassaemia, treated routine settings Greece. Eligible were adults diagnosed β-thalassaemia ≥12 months before enrolment having received ≥6 red blood cell (RBC) units (excluding elective surgery) no transfusion-free period ≥35 days 24 weeks enrolment. Primary data collected at single visit through chart review. Between Oct 21, 2019, Jun 15, 2020, 201 eligible [median (interquartile range, IQR) age 45.7 (40.2–50.5) years; 75.6% > 40 years old; 64.2% female] enrolled, mean (standard deviation) 42.9 (7.8) after diagnosis. Median (IQR) diagnosis RBC transfusion initiation 0.8 (0.4–2.8) 1.3 (1.0–5.0) years, respectively. From enrolment, had developed median six (range: 1–55) complications; 19.6% grade ≥3. The most represented endocrine/metabolic/nutrition disorders (91.5%), surgical/medical procedures (67.7%) blood/lymphatic system (64.7%). Real-world generated by ULYSSES underscore substantial complication burden patients, routinely managed